As EURORDIS’ EuroPlan advisor, I have attended the conference in Bulgaria, organized the conference in Romania and attended the organizing committee meeting in Budapest for the Hungarian Europlan conference that was held on 15-16th October 2010.
Both organized conferences were animated by interesting discussions regarding the present situation of patients with rare diseases.
Bulgaria has already a National Plan for Rare Diseases (NPRD) approved from the beginning of 2009 with a budget dedicated for this. In Romania, there is an agreed NPRD but still not part of the National Strategy for Health.
At the last meeting in Budapest I understood that the problems faced by our countries are quite similar: not very involved authorities, professionals still reticent that the national strategies for rare diseases will be implemented soon and efficiently, pharmaceutical companies warning that in the future they will not provide innovative treatments, only generic drugs, . In addition, research is almost inexistent and permanent changes at political level generated a lot of confusion.
In Romania, which is severely affected by recession, with hospitals that do not have the minimum necessary for their patients, where doctors and nurses leave the country to work abroad, the Ministry of Health is still promoting two main objectives of the current strategy on state health policy:
- to improve the health of the population and quality of life
- gradual increase of resources allocated to ensure a health system at European level.
There are many debates around the reconfiguring process of the overall package of health services in the social health insurance system and the proposed mechanism known as “TICKET FOR HEALTH”.
A co-payment for patients will be introduced in January 2011, including rare diseases treatments. This means that the Romanian Health National Insurance (CNAS) will provide compensation related generic active substance where there is a generic drug. But, where there isn’t a registered generic drug, CNAS will continue to pay the original one.
At least, these are the promises that change all the time in our country. But, where there is life, there is hope and we have to fight together at EU level to have strategies for rare diseases, in order to keep our faith and hope!